A life thrown out of balance

LOS ANGELES TIMES

Monday May 16, 2005

FIRST PERSON
A life thrown out of balance
* When vertigo struck, he wanted a precise diagnosis. What he got was frustration.

By Steven Barrie-Anthony, Times Staff Writer

At first I dismissed the slight dizziness, nausea and a stuffy feeling in my right ear as an oncoming cold. But walking to my car later that afternoon, the world looked off-kilter: People sped past in a blur, and the sidewalk surprised me by how quickly it rose to meet my feet. I stumbled and hugged a nearby traffic signal pole, intent on finding my bearings. Driving home, the horizon wobbled and everything began to spin.

"You look fine to me," my internist said that evening, as he stared into my ear canal. "Must be an inner ear infection. Take an antihistamine."

But the antihistamine didn't help, and two days later an ear-nose-and-throat specialist ordered some lab tests. A hearing test confirmed what I had already begun to notice -- a slight hearing loss in my right ear. An MRI ruled out the scariest diagnoses, such as a brain tumor and multiple sclerosis.

Finished with the diagnostic rigmarole, I sat waiting for the doctor to explain why exactly his face was swaying back-and-forth and making me feel seasick. When I'm ill, I yearn for a precise scientific explanation for what ails me. What I got instead was an answer steeped in ambiguity: I had Meniere's disease, my doctor said, a relatively rare inner ear disorder whose diagnosis can be confirmed only by an autopsy.

Meniere's, estimated to affect fewer than eight people per 1,000, is not life-threatening -- although incessant vertigo and nausea can make you wish for that autopsy. To anybody unfamiliar with vertigo: Hold a heavy book in outstretched arms, spin quickly for a few minutes, and stop suddenly. Now imagine that sensation coming on without warning and lasting indefinitely.

I prodded the doctor for medical certainties."So I have Meniere's?"

"I can't be sure you have Meniere's."

"Why do you think I have Meniere's?"

"Your symptoms match, and we've ruled out some other diagnoses."

"But you said earlier that Meniere's patients have ringing in their ears. I don't have that."

"Some have tinnitus, some don't."

Most doctors believe that Meniere's disease is closely related to a condition known as hydrops, an excessive buildup of fluid in the inner ear that causes the membranes to inflate like a balloon and damages delicate hearing and balance systems. It is not known what causes hydrops, but hypotheses include allergies, genetic flaws and autoimmune disease.

There is no single diagnostic test for the illness -- a diagnosis is given when doctors rule out diseases with similar symptoms such as Parkinson's or cardiovascular disease -- so many people go through a labyrinth of misdiagnoses before learning about Meniere's. And even when the diagnosis is given, there's little solace in its predictive power: Some people will experience only one episode of Meniere's while others will have occasional episodes, much like migraines. Or it may become the permanent lens through which you experience life. Meniere's sometimes remains confined to one ear, sometimes affects both. It may lead to deafness in the affected ear or ears, or hearing may fluctuate, or it may return to normal.

As I hobbled away from the doctor's office, my symptoms were my only certainty: nausea that seemed to turn my stomach inside-out and a frightening dizziness and lethargy. It's as if a curtain has descended between you and the world. That you're sick and scared isn't nearly the sum of it -- you're also severely and immediately alone.

I wouldn't have wanted to be on the freeway with me, but I made it home somehow, stopping at a drugstore to fill a prescription for the diuretic the doctor had suggested. A diuretic, or "water pill," combined with a drastically low-sodium diet, is the most common treatment for Meniere's -- a combination intended to lesson fluid buildup in the inner ear. Research suggests that a drug and diet regimen provides some relief in up to 80% of Meniere's patients. A variety of surgeries have shown some promise in terms of lessening vertigo, but an uneven rate of success and potential side effects such as deafness keep many patients off the operating table.

Eating a low-sodium diet is far more difficult than simply chucking the salt shaker. Dining out is especially tricky, because restaurants tend to salt pretty much everything. If you're preparing meals at home -- a difficult undertaking while having dizzy spells -- forget most anything that's processed, prepared or canned. No pouring a drink to calm your nerves: Most doctors advise Meniere's patients to avoid alcohol. No caffeine or tobacco, either. And amid all this, you're advised to try to alleviate stress, which is thought to be a trigger for Meniere's attacks.

By the second week, I was pretty much chained to the couch. Too nauseated and dizzy to read, watch TV or listen to music, I stared at the ceiling for much of the day. When the stucco danced and swayed, I covered my eyes with a blanket, but couldn't for the life of me fall asleep. The second week turned into the third and the fourth.

My answering machine was full -- bosses from work and friends wondering what was wrong. All were unfailingly supportive, but I never knew quite what to tell them. "I have Meniere's," I'd say. That's the easy part, but then they inevitably ask "what's that?" How do I explain something that I myself don't understand?

After a month of waiting passively for things to improve, I decided, like many Meniere's patients do, to seek treatments outside of conventional Western medicine. A friend suggested an osteopath, and I found myself lying on a table in his office, letting his fingers gently work their way around my head and neck. The problem, as the osteopath saw it, was that a bone surrounding the inner ear "isn't moving in alignment with the rest of the bones in your skull."

I spent hours on the phone with a renowned homeopath in Berkeley, talking as much about my physical symptoms as about the complex web of emotions surrounding them. I tracked down a tai chi teacher and met her in a parking lot in Chinatown -- and was pleased to find that my symptoms somehow allowed me to follow along and learn the form. (Exercise is often recommended for Meniere's patients.)

An acupuncturist with a wonderfully optimistic bedside manner informed me that "the ear symptoms are secondary to your feelings of exhaustion." He listened to my pulse, told me that my kidneys were weak. I didn't mind the needles.

I can't pinpoint exactly what helped, but somewhere amid all those treatments I began to feel a bit of energy rising up. And it's entirely possible, of course, that my symptoms just eased with time. A trip downstairs to get the mail no longer felt as if I'd run a marathon. Faces stopped wobbling, and I found I could drive again. Two months after the first symptoms emerged, I returned to work.

I'm not completely better. I still feel dizzy occasionally, and my right ear feels congested. But I went on a 5-mile hike the other day, even stopping to leap from a waterfall into chilly water beneath. I climbed out shivering and ready for disaster, but the world didn't go tilt. I grinned all the way back home.

Wise people have said that illness and suffering bear forth wisdom. Perhaps Meniere's has made me wiser, but I can't tell you how exactly, and maybe that's just it: I've become more comfortable with ambiguity. The likelihood that I'll never know for certain what's going on with my body doesn't terrify me as fully as it once did.